Thursday, September 22, 2011

Wish I could put glitter in my pipe and smoke it...

Im not really involved in the unicorn-rainbow-glitter-ram it where the sun-dont-shine, attack our differences rather than support and convince-you-our-way-is-the-right-way disagreement.   

I have been reading blogs that discuss the issue... Im sad that its upsetting my DOC friends. 

Its sad the DOC is divided.   We have enough on our plates without being un-supported BY EACH OTHER. 

Judgement and selfishness come to mind right now.

This has made me examine myself.

My blog.  And.  The things I choose to share regarding living with a child with Type 1 Diabetes.

I would think it pointless to get on here and rave on endlessly about how wonderful my husband is.    After a while you guys would think I was Bragger of the century and not stop by at all!   It wouldnt be true to myself and who I actually am in real life to bang on.  I just feel like its insensitive and... deceptive to portray your life as perfect....     Im thinking about that bit of bile that comes to re-visit when watching a couple spoon feed each other a peice of cake....   Rather than think its sweet, Im in the do-that-in-privacy group and arent-you-grown-up-enuf-to-operate-your-own-cutlery?     Its pretentious and a big ol' show.

Hence why I dont actually visit any glittery blogs!!

Im sensitive to the fact that other people feel comforted and can nod and agree in the struggles and hard times we face.  Dealing with D and other areas of our lives.   

I have alot of blessings in my life.  But this blog is about diabetes.   I dont count it a blessing... nope I didnt want this package, I dont think our name was actually on it ! 

It would be nice if I could just glitterize things, but I have a reality.    Just this morning Im preparing to make the 4 hour trip over the weekend to visit my folks - who have beef cattle and a horse and geese and motorbikes..  who live a good 30 minutes from a town.    Its infact the first time Ive been since Reubens first Christmas, when he was 3 months old.   Then he was diagnosed with type 1 the following May.   I have a hard time getting my three young kids ready to go to the park to play let alone on a long trip.   I cant pretend its not producing anxiety and worry.   Im truly sorry that I ring Mum and burst into tears, when I just planned to ring and ask when we could come, but its where Im at right now.   

My kids dont have extended family anymore because they are selfish and rude and are just never going to 'get it'.  

Until you have a child diagnosed with a chronic illness you dont realise what grief really is.    And theres stages to grief, denial, anger, survival, asking for help.    Its very traumatic.   I gotta deal with it as it comes.    I have to feel the pain and express the emotions or I wont cope.

You cope your way - we will cope ours!

Diabetes is a tough master.  
It necessitates we think about our child, and food,  all day.   
All night.   24/7/365.    Never ending.

We have to stock our home pantries, diabetes supply bags and cars with the right carbs for emergencies.   We think about whats in the meal, and the GI of the carbs, what they last ate, how much medicine they had/need/will possibly need.  

We have to know where we are going, how long, and what facilities are there.   
We have to think about supplies like medicine, needles, blood glucose meters, strips, ketone strips, and spares of all of the above just incase.  We have to be able to carb count, and compute insulin on board.    More than that its an emotional disease.  
I have to prick my son and make him bleed at 5am, 8am, 10.30am, 12noon, 2pm, (sometimes at 3.30ish), 6pm,8.30pm,11.30pm and once more overnight.  Sometimes I test because hes upset.  

Perhaps hes low?
Perhaps hes high?
We are going for a half hour drive.   Test.
He tripped over.   Test.   Someone offered us a small chocolate.   Test.  
I have to give insulin to match carbs at 8am, 2 different insulins to keep my son alive.    I mix them together after counting what I need to cover his food, and what I need to correct his number.
Its all numbers.

I give medicine with dinner. 2 more needles.   A long acting to take him through the night.   Not too little so he spends the night high, and threatens hyperglycaemia then the horrific condition, ketoacidosis.   I give not too much so we live in fear of hypoglycaemia.    A 15 year old in the diabetes community just passed away from untreated low blood sugar through the night.  Every night is a gamble of insulin and carbs.    We are not immune from this reality.

We aim for what seems like the elusive balance.

So if you dance around on roof tops singing of rainbows good luck to you!

Love and hugs to you ALL on this journey.

Tuesday, September 20, 2011

Happy 2nd Birthday

You read that right!  

Mr Reuby-Roo is turning 2.    

Can you freaking beleive that!!!

Tomorrow when we wake up, hes going to get a bunch of books (yup Im a book freak) and a first Thomas the Tank engine BMX with parent handle.  Plus some cupcakes.  (Portion control).

Overwhelmingly Im sad that the last two thirds of his life have had the dark clouds of diabetes taking the gloss off his baby-hood.  Probably not for him, I mean hes a strong kid, a real coper and with a sweet disposition.   He has fun, he is soooo happy go lucky and very intelligent.    I mean, more for myself, that sadness that the worry and stress of managing D has been there, that sometimes I wish I was more in the moment, enjoying him climbing and running and playing and not freaking that his fall on the footpath was caused by a plumetting blood sugar.    Sometimes it is.   Mostly its toddlerhood.    Stupid, that normal baby naps should be celebrated and shouldve been my rest as a mum and a repreive each day, but infact have been some of our most stressful lows in the past 16 months.  

Thinking that the old blog needs to be re-vamped as Reuben is no longer a BABY with diabetes. Nope, hes had type 1 for 16months, (incase you havent read re: his diagnosis, since he was 8months), but now he is TWO.

Hes not a toddler in training, hes a tantrum throwing, door slamming, running away,  back chatting, repeating words he shouldnt,  defiant toddler, who turned the pen needle onto me tonight enquiring if he could give me a needle.

Hes active.   Hes like his brother and sister.   They are movers. Out doors-y kids with a lust for life.   GOD HELP ME  this next year as Reuben grows from age 2 to 3 - from toddler to child, the landscape of our life will again shift.   Diabetes will change and my biggest hope is his eating will improve so carb counting gets easier.    I also hope that we teach him some meaningful dialogue about diabetes so he can communicate as best he can of low blood sugars.   Right now he says 'lol lol' (lolly) to indicate he needs sugar, or if the mood strikes him 'joosh' (juice) that he would prefer fruit juice to bring up a low.    


HAPPY BIRTHDAY MY BABY SON REUBEN Heres hoping you have many fulfilling, fruitful safe years until theres a cure.



Thursday, September 15, 2011

Not exactly Carrie Bradshaw

Last night, as I was waiting up for the midnight test (read, waiting to see if the 1 unit of novorapid brought Reubs into his bedtime range of 8-10mmol/l, which it DID bring him from 18.7 to 10.2, where he held all night),  I was flicking around on the tv, trying to find something to watch.   Deciding upon a re-run-of-a-re-runned (?) episode of Sex and the City, I was thinking how much Carrie Bradshaw and I have in common.  

Ya right.  Absolutely nothing.  

Our lives couldnt be any more polar opposite.   I was whisked into a world of glitzy escapism albeit for half an hour. 

She has glamorous shoes, I have some trusty thongs for gardening.  
She has manicures and I have cracked skin from a God awful long winter.  
Carrie juggles cocktail parties and gallery openings and I juggle insulin doses with school fetes, bookweek parade costumes and trips to the grocery store! 
Ms Bradshaw had, in this epidsode, a dilemma with having both Mr Big and Aiden in her bed in the same 48 hour period... I have issues in my bed when I roll over and the dog accidentally falls on the floor.

There was a time long long ago about when dinosaurs roamed the earth.... (okay that was a tad dramatic) but it does seem like ancient history!  When I had ALOT of time on my hands.   I could prepare myself healthy foods, calmy take my supplements, clean my home at 11pm if I chose, soak in the bath, think and read uninteruppted by little people, go to the gym morning and night, go out to dinner with friends after working afternoon shift.  

That was a different season.   A season where popular culture seemed to matter.   When I considered the vanilla or the camel skirt a crucial decision.  When climbing the corporate ladder and adding to my portfolio seemed to matter.  A real valuable time in my life when I could go to church twice a week, read my bible plenty.   A time when my body hadnt been ravaged by the rigors of birthing 9lb babies and the subsequent sleep deprivation which slithers into the birthing suites and clasps your hand and sneakily becomes your partner in motherhood.

So Im tapping away at my blog early morning because I have a head cold which just makes laying horizontally impossible to breathe.  

Life has changed alot. 

Somewhere in all this hard work with parenting is a joy so full your heart wants to explode.  Thats how we Mummies keep on keeping on!    My family has been truly blessed this year with my eldest son being under the tutelage of a wonderful teacher.   She has a gift of seeing a child for who they really are and bringing out the best in them so that they have a strong foundation for learning.       Last night we had parent teacher interviews and my eldest baby got a rave review!   - and I have to say that I dont want Carrie's Manolo Blahniks (maybe just for a day, but I'd give them back in exchange for my functional footwear)...   The life I have now, the three engergetic sweet children God has blessed me with... Diabetes and all...  

Theres no comparison.   Life is richer, Im a better person as I help them grow.

Friday, September 9, 2011

the huge-est egg and lots of hypos

Im trying to cut back on both carbs and insulin.   I gotta say no to the other kids regarding food, alot.    I have to stop what Im doing...   to test, to treat hypos, to think about food MORE than before.   More substituting depending where hes at, and what hes doing.  Im getting less sleep than before if that was humanly possible.  Preparing myself for the rigors of the pump!

Today Im just ticked off, not being able to just enjoy my daughters music class.  I mean, Im chasing my type1 around just generally resenting diabetes, thinking surely this behaviour is due to being HIGH, that ticked me off more.   Turns out he was dropping with the activity, on his way to a hypo and Im pulling him off a chair as hes about to dive out the window.   Grabbing him by his coat to stop him running off into the carpark.   Toddler behaviour and D together just blows.   Its hard work.   He slept through last night, no breast feeding so self weaning is finally happening, and I was up every 3 hours, irrationally of course, testing.   He held.  

Every day at lunch weve got hypos to treat before he can eat real food.   I hate that I have to give full sugar anything to my not yet 2 year old.

Weve had a 1.9 which is the second lowest reading we've had since Diabetes showed up.   Hubby had just left the house for a night at a Thai boxing gig and I was wrapping up my jam making for the afternoon.   It was comical, jam and jars and boiling water bath, jar and lid lifters and tongs and towels.   Damn its messy work.     I actually had Reubs in my mind, thinking I'll tidy up here and go to where hes napping and pop a quick test.  

I wasnt expecting a 1.9, as only 2 hours earlier he had registered as  10.2.   Perfect to go down to a nap at.   Guess the read wasnt from slow acting carbs?   Anyway, I heard my dog make a short sharp woof at the bedroom door.   Obviously she was calling me.   Shes done this before after staking vigil at Reubens bedside.  

I tip toe in, and I see him laying peacefully, but something is different.   Hes twitching.   His tiny little hand shakes and I get a shot of adrenalin, grab him a drink and he sculls the whole thing.   Then I test him.   About 10 mins passes and thats when I get the 1.9.   He begins to scream, obviously the sugar is kicking in and hes confused.   This is the stage when I have to get aggressive to get the sugar into him, he refuses and hes strong.   Flailing and vocal and glucogel is spread all up his face and hair after spitting it back at me.   The reading isnt budging.

It takes 30mins and a bunch of dodgy readings to get him back up to a 7.8.

The peace I made with D is fleeting. Today I loathe it.   A big ugly cry and a call to hubby for some comforting words, and now an arvo storm... the world seems better.

Slow living is going great.   Its helping on the D front.  

Today we collected our second egg (they are BIG eggs)  from our chooks.   So nice to be part of the chain again, plugged into food production, the earth, simpler methods of living.   Less rush and complication and more peace and quiet.   Amen to that !